Deprogramming Women Since 2013

Komen

An idea has been buzzing around in my head lately that I’m struggling with, and so I’m writing it out here because I think it needs discussion. I really want to hear your thoughts on this.During the civil rights movement of the middle of last century, there were two competing approaches. There was the Martin Luther King approach of integration and working with people of all races to improve the lives of black folks. And there was the Malcolm X school of thought that said that African-Americans needed to take their power and lift themselves up, that integrating would always mean subjugation in a white system, and so black systems needed to be created.

I’ve always been an MLK kind of activist, and have continued to be so in my cancer activism. I am grateful for the support of people with early stage cancer or no cancer at all who see that metastatic patients are getting the shaft in a cancer system that celebrates survivors and ignores the dying. I continue to believe that in activism, allies are essential. This idea bouncing around my head isn’t about excluding anyone from the movement to save the lives of patients with metastatic cancer.

But I’ve started to think that metastatic breast cancer can’t be incorporated into traditional breast cancer programs, that it needs its own system. Metastatic patients are just fundamentally different from early stage patients. We aren’t part of the pink party narrative, and we’re never going to be. Trying to integrate us into the existing work of groups like Komen or Warriors in Pink just doesn’t make sense, because that’s not who we are.

So maybe what we really need is a Malcolm X approach: we need the Komens of the world to create new programs for metastatic breast cancer, instead of trying to integrate us into their existing programs. Let the 3-Day be about pink feather boas and funny hats–let the early stagers celebrate their NED status–but ALSO put on major fundraising events that are appropriate to metastatic disease, where the funds go directly to metastatic research and metastatic support programs. Create a new system for us.

We’re starting to see this in other programs, like Pfizer’s Story Half Told, which isn’t pink at all, and in metastatic patient conferences like Living Beyond Breast Cancer’s Thriving Together Conference. I go to a mets-only support group, because my needs are fundamentally different than the needs of early stage patients. If LBBC can do it, why not Komen?

Imagine if Race for the Cure was transformed into something that is truly about cure. Take all the pink off of it–get rid of the dogs in bras and replace them with pictures of those we have lost, and those who we’ll lose too soon unless more research happens. Guarantee that every dollar raised by the race will go to metastatic research, not marketing or “awareness,” so participants know that what they’re doing is actually going to save lives. Imagine how much more money they’d raise.

And, imagine if we extended this paradigm to other areas of cancer. Imagine if NCI had a dedicated metastasis research program, with metastatic patient advocates and doctors specializing in metastatic cancer treatment and bench researchers focused on understanding metastasis. Instead of trying to incorporate metastatic cancers into the existing organ-of-origin structures of cancer research, give us our own programs.

Or, more radically, maybe what needs to happen is that we just ignore the existing breast cancer world entirely and start a new one. Maybe groups like MET UP and METAvivor and MBCN have the right idea: building new systems of research funding and lobbying, outside the pink world, across organs of origin. Maybe it’s just that I’m tired of trying to fit into legacy breast cancer organizations’ existing framework, because that framework doesn’t work for us, and it never will, and I’m not seeing those frameworks changing dramatically in my lifetime. Maybe Komen is a lost cause.

Anyway, that’s what’s been bouncing around my head. Let me know what you think of all this in the comments!

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So, San Antonio. That was a hell of a week. By now, you may have heard that Dr. Kelly Shanahan (a fellow metster and a seriously smart woman) and I had an interesting conversation with a scientific advisor for Komen, Powel Brown. I wrote a Facebook post about it on my personal wall, and made it public. Here’s what I wrote:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Upon reading this, I think I broke the metster portion of the Internet, since the post was shared over 1000 times and the awesome Eileen aka Woman in the Hat also wrote about it on her blog, for which I am super grateful. I got a lot of people saying how brave I was to share this conversation, to expose what a national advisor to Komen actually thinks about us and our disease. But you know what? When you’re dying, when your friends are dying, I mean, what do I have to lose? What’s Komen gonna do to me that cancer already isn’t? Brave is when you’re scared and you do it anyway–but I’m not afraid of Komen, so it’s not actually bravery. It’s just giving no fucks, combined with a whole lotta anger.

One of my friends emailed Komen CEO Judy Salerno about this. And this was her response.

I appreciate the opportunity to address some of the issues you raised in your email to us this weekend. I’m not sure there’s an answer that will satisfy everyone, but this is important to me and I hope we can have additional conversations.

This starts with an explanation from me about why we do what we do. I promise to be very candid, as you’ve been with us.

As I write this, I’m thinking about the people I knew who have died of metastatic disease just this past year. One was our Komen Ozark executive director, another was a longtime Komen patient advocate, and another was a dear friend of mine who died last month. There are others, of course, but I mention this so that you know that this is personal to me, as it is to everyone at Komen.

I’ll start with our approach to research. Jill, as you know, we’d like to fund everything that needs to be funded, but the reality is that this disease is complex, its impact is huge, and our resources are finite. Finding cures requires a comprehensive understanding of how breast cancer starts, how and why it spreads, why it affects some women differently than others, and how to better treat it or prevent it.

This is why we at Komen fund along the entire research spectrum, because there are many issues to understand and solve, and what we learn in one area may lead to answers in another area. Some of our research projects – in biology and causation, for example – are not specifically labeled as metastatic research but could have applicability to metastatic disease. That said, we’ve devoted half of our new research funding specifically to metastatic disease in 2015 because it is a priority for us.

Finding cures through research is, and always has been, at the core of our mission. But we also know that too many people die of breast cancer because they can’t access high-quality healthcare. For that reason, a significant portion of our mission spend is directed to programs in thousands of communities that pay for things like insurance co-pays, diagnostic tests, patient navigators, and other medical expenses, as well as what we call treatment support: transportation, childcare, emergency living expenses, and other things that often stand between patients and their medical care. A list of what we and our Affiliates fund in the community is available here.

Some mistakenly label the community health aspects of our work as “awareness.” It is, in reality, the in-the-trenches work that must be done to help women and men who face breast cancer today, at all stages of the disease. Komen is the only breast cancer organization that funds this kind of large-scale community health work along with a large research program. We do this because it also contributes to saving lives.

Finally, Powel Brown is an esteemed scientist and a member of our Scientific Advisory Board, which serves as an advisory body to Komen on research and cancer science, but does not advise on our organizational or operational priorities. He was not speaking for the Komen organization, but he is correct that our ability to fund research – or any of our work – depends on the amount of money we’re able to raise every year through our donations and fundraising events. This year, we’ve begun a new donation program which gives donors the ability to fund metastatic research directly. We encourage those who are interested in supporting metastatic research to help us fund those projects through this directed donation program.

We also want to keep the conversation going, through the many venues we have to engage – the Metastatic Breast Cancer Alliance that we helped to found, with metastatic patients directly, and by exploring joint funding of metastatic research with other cancer organizations.

Like cancer itself, these issues are complex and not easily resolved. There are areas where we may not always agree, but I want you to know I am listening. More importantly, I have identified metastatic disease as a Komen priority, meaning continued investment in metastatic research and help for metastatic patients. Our common enemy is this terrible disease.

Sincerely,

Judith A. Salerno, M.D., M.S.

President and CEO

Susan G. Komen

OK, so, there’s a lot to unpack there. Let me start at the beginning.

Saying “I have friends who died of breast cancer so this is personal to me” is the equivalent of a white person saying “I have a black friend so I’m not racist.” Excuse me while I roll my eyes and thank you for deigning to be friends with the likes of us. If it’s so personal, why is Komen spending so little on research, which is the only thing that will save our lives? Actions show what’s really in your heart, not words. Not platitudes about how much you care and how you’re listening can substitute for concrete actions to support our community.

Then there’s the accusation that we’re criticizing Komen for spending money on direct patient support because we conflate it with awareness. NO. The metastatic community is not stupid. We know that direct patient support is important, and we know that it is not awareness. Please don’t insult our intelligence. What we’re criticizing is the amount Komen spends on what it calls “education.” Here’s a screenshot of the most recent audited financial report from Komen–from their website, so this is THEIR data.

See where it says “Public Health Education”? See the total in that column? Yeah, it says $122,540,737. See what it says for “Research”? $43,396,973. Those numbers are the opposite of what I believe they should be. But the problem is, see where it says “Marketing and communication” in the column on the left? See what that total is for “Public Health Education?” $41,873,249. Of their public health education budget, nearly $42 million of it was literally spent on advertising. Nearly as much as their entire research budget. See, with “education,” you can count your marketing expenses as a program expense by putting something educational on your marketing materials, and then it looks like you’re spending a bigger proportion of your budget on the mission and less on administrative expenses. Can’t really do that with research.

So no, I’m not complaining about the $13 million they spent on “treatment services.” I’m complaining about them spending almost 10 times that much on awareness, a third of which is actually marketing.

Then there’s the part about how Dr. Brown doesn’t speak for them. OK. Then maybe don’t put him in front of the Komen booth at the largest breast cancer symposium in the world and let him talk to people? Maybe don’t put him on your scientific advisory committee?

My favorite part, though, is that after saying Dr. Brown doesn’t speak for them, she confirms the core of the offensiveness of his comments: Komen won’t do more research until they get more money. An organization that spent $122 million on awareness can’t be bothered to shift any of that money to the only thing that will save our lives: research.

And then there’s the standard “We’re listening” stuff. No you’re not. You’re talking. And you don’t even realize that you’re lecturing metastatic patients. We’re dying and you’re telling us we shouldn’t complain that you’re letting us die. See what I mean about “I have friends who died of breast cancer so this is personal for me” being eye-roll-inducing?

And this is why Komen continues its steady decline into irrelevance. It’s living in the past, and this is why we as metastatic patients have to realize that they’re not coming to save us. We’re going to have to save ourselves.

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The Hubs wrote this last night. I haven’t edited at all–this is purely his heart. I’d love it if you guys shared it around the interwebs.

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Saturday, February 21, 2015

Susan G. Komen
5005 LBJ Freeway
Suite 250
Dallas, TX 75244

To whom it may concern,

I am writing to you asking that you change your focus of your organization and reallocate a large portion of those funds from that refocus to an under resourced area of research. The current Komen mission is focused on education and funding research. I would argue that the first part of the mission has been accomplished and that you need to focus more on the funding research. Everyone is aware of breast cancer. From the NFL wearing pink, the various products that you can buy that have pink ribbons on them to the flowing masses of people that participate in the Walk for the Cure. People are aware of it. They are so aware of it that it threatens to lose meaning or importance of it. My observations of it has that it has become a marketing and revenue generation business, but it feels like it is a business that has lost track of its mission. The statistics I’ve been able to find show that somewhere between 15%-20% of the funds generated by the Susan G. Komen for the Cure charity are spent on research. Using your organizations own statements in the past of “83 cents of every dollar…” that means that about 63% of your funding dollars are spend supporting the other missions then research. Your organization has won the education war. In my 38 years on this earth, I’ve seen a steady increase in awareness as well as society being engaged on the issue of breast cancer. People can talk about it. People are aware of it. They know it is a problem and they know people impacted by it. The mission has been accomplished. It is time to flip the numbers around. According to your own numbers, you spent 38% of the 2013 funds on education, and only 18% on research.
I implore you to switch your mission priorities around. The primary mission should be funding research now and not education. Research funding has been being cut left and right at all levels in science, and while the amount of money that Komen is providing in grants has been up, the percentages are not, or at least not that I have been able to find reference material on. You should instead refocus much of those education dollars on research for stage IV and prevention of cancer progression from the various stages. That we need more then treatments and that while are quick to point out 5 year survival rate for early-stage breast cancer are excellent, but that is not enough. What of those with stage three and stage four? What of the why’s and how’s of the sometimes rapid progression from the various stages? That is the hard work. That is where lives are lost and families destroyed. That is where the need is greatest, where research dollars could have significant impact and spur research in those areas of the greatest impact. Think of what things would be like if Komen came out and said “we are going to spend 45% of the money brought in on research…” You would be effectively tripling the amount Komen spends on research. Not only that, because Komen is one of many and it is in a leadership position, it would send a clear signal of what the priority should be.
My wife has stage four breast cancer. She found a lump in March of 2014, and within a week our families life was upended as the diagnosis went from stage two, to stage three and after MRI’s, brain scans and PET imaging settled on stage four. Since then she has had two different rounds of chemo, a single mastectomy and is getting additional hormone and bone therapy. She recently had another PET scan that showed what is likely cancer in the marrow of her bone of her arm and on T11/12 of her vertebrae where there was none before. She is 38, a wife and mother of a seven year old boy and a three year old girl. She is quite possibly the strongest person I’ve known in my life and I have been there through all of this with her. We both know the statistics and the numbers about the cancer details and the impact that her young age has on the 5 year survivorship rates. The hardest thing on her hasn’t been surgery, the treatments, giving up working to focus on treatment or the doctor appointments. It hasn’t been losing her hair, the exhaustion or the side effects of the treatments. It has been the likelihood that she might never get to see our son graduate elementary school, or high school or college. What makes the tears flow is that she will likely never see our daughter start school. That statistically, she will miss all those moments of their lives and never know her children as adults. That her and I will not grow old together. And so you see, this letter is not the ramblings of someone who does not understand the situation, but one of someone who is all too aware of the realities of what stage four cancer means. That there is no cure and that the only way out of stage four cancer is feet first. That at some day, and I pray this day never comes, that my lovely wife will join the statistics for a final time of being one of the 40,000 women in the US who die from breast cancer every year.
So again, I implore you. Change your mission. Change your focus. Change the math and the equation. Spend more, not just a little bit more, but a lot more on research. Do the hard work and lead. Empower science and medicine to find a way. Celebrate the win of education, but fight the fight that is killing people every day. Fight the fight to give people more time and not just early stage, but late stage as well. So that even if my wife dies from breast cancer that maybe out there in the world there will be someone who benefited from the change of focus. That even if she dies, that maybe someone else who got a new experimental treatment derived from research will live, and that her family/friends/husband/children will be able to hold her close and experience all the things in life that they are supposed to together.